Karinya Lewis

Show patients their retinal images and highlight any changes. BOTSWANA. Peter Blows

Diabetic retinopathy is one of the many
complications of diabetes. Because there
are no symptoms initially, patients will not
realise that they have the condition until it
is at a proliferative stage or they develop
macular oedema, when their vision
becomes affected. Unfortunately, vision
that has been lost may never be regained.

To prevent visual loss, early detection
is needed at the pre-proliferative stage.
This can only be achieved if the person
with diabetes has regular (often annual)
examination of the retina, starting from
when they are first diagnosed. Screening
of diabetes patients therefore has to be
timely and in accordance with locally
agreed guidelines for detection, referral
and treatment. The challenge faced
across many programmes is that people
with diabetes:

Do not always attend regular DR screening

Present with late-stage retinopathy which results in a poor visual outcome

Have poor acceptance of laser treatment.

In national population-based screening
programmes, the desirable target uptake
is 80%, which is difficult to achieve. The
UK National Screening Programme took
five years from the start of the programme
in 2006 to reach this target. Attendance
for initial laser treatment is reportedly
around 70%, but in some studies as few
as 21–45% of those patients who started
laser treatment had completed the
course of laser when they were followed
up 6 months later.

Why do patients not attend?

Reasons for non-attendance in various
setting have been studied qualitatively and
quantitatively and common themes arise.

Patient-related reasons

These can be remembered using the first 7 letters of the alphabet.

Awareness about diabetes and eye complications is often limited. Patients may not be aware of local screening centres

Belief that they do not require retinal examinations or treatment as their vision is good, or they have a mild form of diabetes, or are too old

Cost: direct and indirect (e.g. travel)

Distance from screening/treatment centres and discomfort from dilating drops

Effort to attend yet another clinic. People with diabetes often have multiple hospital appointments

Fear of laser treatment and fear of its impact on quality of life and jobs. A lack of family support

Guilt surrounding failure to control blood glucose levels. People fear that an eye examination, or being told they need laser treatment, will confirm their guilt
and make them feel even worse.

Provider-related reasons

The existence of poor counselling and advisory services about ocular complications for people with diabetes

An inefficient system for getting patients to come, and to then come back if needed (‘call and recall’ systems)

Long waiting times for screening or treatment

Complicated referral mechanisms or inaccessible locations where services are offered.

Assessing the situation

The different factors in patients’ experience
– which either prevent or encourage their
engagement – should determine what
interventions might improve uptake of
services. By assessing the situation and
identifying key stages in the process (from
screening to completion of treatment) we
can target interventions at those most at
risk of vision loss.

The non-attendance rate

This is the proportion or percentage of
patients who do not attend their appointments,
whether for their yearly eye
examination or for laser treatment. We
should aim to make this figure as low as
possible.

At a clinic level, work out the
non-attendance rate, say for 1 month, by
dividing the number of patients who did not
attend their appointment (for screening,
the eye clinic or laser treatment) by the
number of patients who have appointments
in that time period. Multiply by 100
to obtain the percentage.

Coverage

Coverage is the percentage or proportion
of the target population who undergo
screening. In the case of diabetic eye
disease, ‘screening’ means yearly eye
examinations for everyone diagnosed with
diabetes. Coverage is an important measure
of the quality of a programme, and we should
aim to make this figure as high as possible.

To work out the coverage offered by your
clinic or programme, divide the number of
patients who attended screening on a
yearly basis by the number of patients with
diabetes in your catchment population;
multiply by 100 to calculate the yearly
coverage of screening as a percentage.

The pathway

Can you identify which part of the pathway,
from screening to treatment, is most
affected by non-attendance?

Is there a particular geographic location
where assessments or treatment take
place, where non-attendance is higher?

Who is not coming?

Among the diabetes patients, can you
identify any particular subgroup who
would benefit most from a targeted intervention?
(For example, younger patients,
those newly diagnosed, people with
language barriers, or people with low social
economic status or poor education.)

Addressing the challenges

The following practical suggestions are
gathered from patient recommendations,
models of good practice and successful
interventions. Together, they improve the
overall patient experience, improve ease
of access to services, and encourage and
engage the patient through education.

Encourage health workers to support patients with diabetes (especially those with poor control) and work with them to find solutions to the challenges of having diabetes. It is vital not to blame the patient or make them feel guilty.

Strengthen patient communication

A diabetes ‘passport’ has been a useful
tool to encourage patients to feel
ownership of their disease and facilitate
communication between health professionals
and the patient. The patient brings
the passport (a specially designed booklet
or file) to every appointment and health
professionals record current medications
and results (blood sugar, blood pressure,
cholesterol, kidney function, podiatry
assessment and retinopathy grading) as
well as when next assessments are due.
The passport helps to start conversations
with the patient about their diabetes.

Offer personalised annual education

Screeners or ophthalmologists can show patients their retinal images and highlight any changes (improvements or deteriorations) to encourage future attendance and good glycaemic control.

Information should be available to the patient in their preferred language and in large print.

Identify and engage patients who frequently fail to attend

A common policy in eye clinics is to
discharge patients who do not attend
on two occasions. However, in diabetic
eye services, these patients should be
identified and contacted personally to
understand their reasons for poor
attendance (e.g. timing, transport, or
anxiety) and solutions must be found.

Set up a reliable system. For example,
use text messaging and send reminders
for patients about their appointments.

Large-scale programmes benefit from
employing a diabetic retinopathy
co-ordinator who is responsible for
monitoring the quality of the programme
and ensuring that people keep coming
back for their appointments. For more
information on this, see the NHS diabetic eye screening (DES) programme.

Practical considerations

Giving attention to the following practical
arrangements can support patients to
attend their appointments more regularly

Cost and accessibility

Minimise the cost to the patient by
reducing the time required and the
distance travelled.

Locate screening where there are good
transport links.

Ensure that patients can change the
appointment to a more convenient
time, especially if they are employed.

Patients prefer their annual visits to be
repeatable. Keep the location and
routine the same, if possible, so they
can become familiar with the process.

Waiting times and dilation

Seeing patients punctually and
efficiently will reduce time off work and
encourage them to return each year.

Retinal photography without dilation
drops is possible, but in older patients
with cataract their photographs may be
ungradeable and patients will need to be
called back, unless quality assessment
is done by the photographer at screening.

Centralised services

Some services have combined diabetic
retinopathy screening with other
check-ups such as blood pressure
monitoring or annual flu immunisations.

Centralised booking systems can
reduce administration and costs but
may offer less flexibility for those who
present opportunistically, or for family
members who want to attend together.

Improving compliance with laser treatment

Educate patients about laser treatment,
its intended effect, the need to
complete the course (at least two visits
are usually needed) and the need to
allow time to evaluate its effectiveness.
This should take place at the time of
consenting to laser treatment.

Written and visual information (retinal
images) supporting the discussion
should be available.

The health professional applying the
laser should ensure that the patient is
made comfortable, with appropriate
anaesthesia and minimum effective
power settings.

If unable to achieve comfortable laser
with topical anaesthesia, there should
be the option to give a local anaesthetic
block, or even general anaesthesia with
indirect laser.

Health professionals should understand
the discomfort which may be caused by
laser, and offer sympathy rather than
irritation or denial, thereby establishing
a good relationship and encouraging
the patient to return.

Conclusion

Improving patient engagement with preventative
services requires persistent effort and
innovation from service providers. Whilst
laser treatment is still the best way of
preventing significant visual loss, we are in
a new era of treatment with anti-VEGF
injections which are given monthly.
Improving patient engagement, education,
and compliance will be even more crucial if
these new treatments are to be effective.